after my last update, with improved breathing, I decided I would do a 5K (5K is really 3.1 miles for those that didn't know, I didn't) it's to raise money for our local animal shelter...so this will help the animal, it will help me and surely it will help my family and friends......the walk will be a week from tomorrow, yikes!
I have been walking everyday and am up to 2 miles every other day, only one and a half more to do at one time I DO use oxygen, and have to turn it up to two usually during these walks.......
I figure two month ago I could hardly do half a mile and with pushing and better intake of air I can now do this!
anyone that has any doubts about a LVRS, think again!!!!! Life is good
Good for you! And the animals, too. Slow and easy will get you to the finish line.
I can only imagine how happy your family is to see you so much better. I can't remember what your FEV1 was b/4 your surgery, or how many liters you had your O2 set at. But if you're able to run after kids, with or without O2, wow! I saw my pulmo last week and he was discouraging regarding LVRS. He said the most people it helped were those who already tolerated exercise well, and that he didn't see as the surgery improved them that much to make it worth the risk. I know you feel differently, obviously! Could you help me by telling us exactly how much better you are doing now? Like, how far could you walk b/4, do you still need the O2 to go to the store, or examples of what you can do now that you couldn't do b/4, etc. I don't know how bad off you were before the surgery.
Hey Susanny, I could go on and on about this especially what your doc said...he has it completely backwards.....this is a good site that covers many basics www.umm.edu/thoracic/lvrs.htm
as my nickname, Zoom, states, I have always pushed the envelope more than I should....before the surgery I did much of what I'm doing now but that was with loosing bladder control and leaning on my knees gasping for air......(Jackie can support this )......now, post LVRS, I can carry on a conversation without having to stop and "catch my breath"....I can get around my home without 02 and doing PLB........All the little, everyday things are not such a major challenge now although the may still make me plb, I recover quickly..... pre-surgery I would walk anywhere between 5-10 minutes and half a mile depending on the day and how sick I was....my FEV was hovering between 19 and 20....diffusion rate at 20...used 2-3 liters of 02 and that was with a TTO (you use less that way)....
since the surgery and all the complications of life has eased up, my FEV is between 20 and 23 BUT I feel better, SOOOOOOOO much better.......I did have a few complications and it wassn't as smooth as we had hoped but I would do it again in a heartbeat! I was also mentally ready for this, makes a huge difference....I also had total confidence in my doctors......never would have done it without that.........................
Now that I wrote a novel I will stop LMAO! but would love to answer any questions anyone might have
Post by Blossom/Jackie W. on May 29, 2010 15:58:01 GMT -5
Waterworks eh? TY for your candor! Not that I can relate.... .... right?
Seriously.... I think with what you've said here and shared, opens the door to a WHOLE LOT of subjects in the COPD area....... i.e Bladder contol/loss of......; LVRS... what's a success?...... oxygen usage pre and post LVRS.....
Heck I see soooo many possibilites!
Learn & Share.......
P.S. What Wendy ISN'T telling you is that she's indirectly raising a few funds .... the animals benefi,t and she's benefiting because it's like Mutual encouraging.
Thank you so much for sharing that with me, Wendy. (And TG for Poise, btw!) It is really helpful to hear from a real person how things worked for them. I've also been mulling over having the valves put in, as it seems like it is supposed to do the same thing. But then I wonder what happens to the parts of the lungs that no long receive O2,..do they shrink up or do they stay the same size. If they don't shrivel up, or whatever they'd do, I don't see how that could be the same idea, or would be of any help in giving more room for breathing. Do you feel like you have less pressure and more room in your chest, or didn't you feel any pressure in your belly before surgery? I know part of mine is from maintenance pred., too.
I wonder if the FEV1 % is higher than yours was, if improvement would be even more significant after LVRS. I guess I'm just wondering if waiting is best, or seeing about it now before I get any worse. I am one who, although I'm at 37%, with a diffusion rate of 33%, I get more SOB that some people with much lower numbers. I can't do stairs, or even slight inclines, bend over (to clean or plant flowers for example), without totally gasping for air. I'm thinking my lungs must be humongus, as my stomach sticks waaaaaay out, too, besides feeling the pressure when bending over, or even just pressing on my belly. I cannot even go to the chiropractor as laying on my stomach is no longer possible, I can't breathe. Same with laying on my back or left side. But unless I'm out of breath from doing something, I usually don't have much problem with talking. It is getting harder to eat now, however.
I know there's no way to tell which parts of my lungs are damaged without a scan. I asked my pulmo about having one done last year and he said they'd do it if I decided to look into the surgery more. I think I'll press him harder for it so that I can at least know whether it's a possibility or not. You make a good case for going for the surgery.
I really appreciate your taking the time to explain things. That site you noted was really helpful, too. Sounds like a great place to have it done. I'd probably go to Pittsburgh or Cleveland. Cleveland's closer but my daughter lives in Pitts. so could stay with her after surgery.
you are near two excellent hospitals to have this done....I suggest you talk to them about testing.....nothing can hurt being tested and then you know.......the diffusion rate is causing your sob so severly with your higher FEV......the way you speak of how lyou feel doing things I could have written myself......my regular pulmo was afraid my dlco was too low to have it done and that my emphysema was too much through-out my lungs. BUT she also knew they (at Nat Jew) were the expects and we would see what happened after the testing......smart doctor! BTW, when I first started this adventure, I went down with my doc wanting me to see about a transplant and I wanting to know about the stents ........for one reason or another, I got the LVRS and again, would never look back..............it's the everyday things that make such a difference!
I did not know that about the diffusion rate. I think, if I remember, I'll pose a q. for the RT on the main website for an explanation.
My dr. wanted me to look into transplantation 2 years ago. I'm a chicken, I'll admit it. I am afraid of pain. Me, the woman who refused all meds for childbirth. I know the day is coming when I'll know it's time. Was it because the stents were still in trial that made you decide on the LVRS? There's another q for the RT, maybe he knows what happens to the blocked off parts of the lungs from the stents/valves.
well everyone, my walk is two days away, Sat A.M. tomorrow I am taking it easy, just watching kids
I want to thank everyone that has supported me, both with donations and with your encouragement and support....It does mean a lot.....In a way I feel like I'm doing this for all of us.....
I don't know how many remember but I have spent the past 4 years getting back up to 10 minutes on the TM only to get an infection and start back at 2-3 minutes......now I'm about to do a 5K.........thank you all again